Spiritual Community Experiences of Families of Children with Disabilities

Abstract

This mixed methods investigation examined experiences of families of children with disabilities in their spiritual communities. Using the Spiritual Community Experiences Inventory, fifty-eight parents rated importance of and satisfaction with clergy, various religious activities, and support received from clergy and spiritual community members. Families reported that participation in religious activities and support from clergy and members were important. Moreover, families were highly satisfied with these activities and support. As predicted, a significant relationship was found between frequency of attendance, amount of support, and satisfaction with activities and support. Only in the case of formal ceremonies was frequency/satisfaction relationship not significant.

Parents described a variety of factors that influenced their level of satisfaction with spiritual community experiences. Families reported that participation was influenced by: (1) amount and quality of social interactions with other children and adults, (2) level of knowledge, training and understanding of staff and volunteers, (3) level and appropriateness of accommodations provided, and (4) degree to which their child's disability interfered with participation. Additionally, parents reported that their experiences were affected by availability of emotional and practical support targeted to their unique needs, existence of social support networks, level of acceptance and knowledge of community members and clergy about disability, and the value the religious community places on parental knowledge of disability. Parents did elaborate on negative experiences and lack of support, which led to their non-participation and in some instances to switching communities.

Further testing and refining of the instrument is required to strengthen its reliability and validity, clarify ambiguities, and identify factors families believe are important to participation. Additionally, leaders of spiritual communities must identify needs of families of children with disabilities. By tapping families as "experts" and networking with other religious communities, disability groups, and agencies, they can better meet these families' needs.